ABSTRACT

This paper addresses the critical healthcare challenges faced by refugees, particularly the management of chronic conditions like hemophilia, in the context of displacement due to conflict, persecution, or natural disasters. The health trajectory of refugees often shifts from acute to chronic conditions as displacement extends, necessitating a shift in healthcare provision from emergency response to continuous, specialized care. The prevalence and complexity of managing hemophilia in resource-limited, transient settings underscore the urgent need for regular, specialized treatment and highlight the severe physical and psychological consequences of inconsistent care.

An evidence-based, interdisciplinary approach is advocated to effectively address the comprehensive healthcare needs of refugees. This includes aligning clinical medicine with public health principles, psychology, and social sciences to develop a sustainable healthcare model that extends beyond immediate trauma response. The paper emphasizes the importance of ensuring medication access, providing specialized care, and implementing preventive strategies and health education tailored to the refugee context.

Furthermore, it highlights the necessity of addressing mental health and understanding the social determinants that affect health outcomes among refugees. The paper advocates for policy reforms and legal considerations to facilitate better healthcare access and equity. It calls for an integrated strategy that not only addresses the immediate health concerns but also lays the foundation for long-term, sustainable healthcare solutions for refugees.

By proposing a comprehensive approach that combines clinical, public, and mental health strategies with an understanding of the broader social context, the paper aims to contribute to the development of more effective, equitable, and sustainable healthcare systems for refugees worldwide. This approach underscores the moral imperative to ensure health equity and the dignity of all individuals, particularly those displaced and living in challenging conditions.

In conclusion, the paper posits that addressing the healthcare needs of refugees, especially those with chronic and rare diseases, is a medical imperative and a global ethical responsibility. It calls for a commitment to health equity, where the dignity and rights of every individual are upheld, and healthcare strategies are adapted to meet the unique challenges displaced populations face. This approach is essential for building resilient health systems that can respond effectively to the needs of refugees and ensure that no one is left behind in the pursuit of health and well-being.

 

1.     Introduction

The global health challenges faced by refugees represent some of the most pressing and complex issues in contemporary public health. Often compelled to flee their homes due to conflict, persecution, or natural disasters, these individuals find themselves thrust into environments far removed from the healthcare systems and living conditions they once knew. They encounter many challenges in settings such as refugee camps or temporary settlements. These environments are frequently characterized by overcrowding, inadequate sanitation, and limited access to clean water and healthcare facilities.[1] Such conditions pose immediate health risks and create a breeding ground for acute medical issues.

Initially, the health profile of refugee populations is heavily dominated by acute conditions, such as injuries sustained during their escape, along with infectious diseases.[2] The stressful and unsanitary living conditions within camps or settlements often exacerbate these immediate health concerns.[3] The spread of communicable diseases is facilitated by the close quarters in which many refugees live, while limited healthcare resources make effective treatment and containment challenging.[4]

However, the health implications for refugees evolve as their displacement extends over time. The emergence of chronic diseases has become a prominent concern. Conditions such as hypertension, diabetes, and various forms of cancer, which require long-term management and consistent medication, become increasingly prevalent.[5] These chronic illnesses present a unique set of challenges in the context of refugee health care. The consistent management of these diseases often requires regular monitoring, medication, and access to specialized healthcare services, which are scarce or inconsistently available in many refugee settings.

Moreover, the nature of these chronic conditions means that they cannot be addressed with the emergency-focused medical interventions often prioritized in refugee health initiatives. Instead, they require a sustained and systematic approach to healthcare provision –frequently at odds with the transient and resource-constrained environments in which refugees find themselves.[6] This situation highlights a significant gap in the global response to refugee health needs, underscoring the importance of developing healthcare strategies adaptable to the unique challenges of managing chronic diseases in such contexts.

The situation for refugees becomes increasingly dire when considering individuals suffering from rare diseases such as hemophilia. Hemophilia, a genetic disorder characterized by the inability of the blood to clot properly, requires ongoing, specialized care – a type of care that is alarmingly scarce in the context of refugee life. The inherent challenges of managing such a condition are magnified manifold in environments where healthcare systems are fragmented, resources are limited, and access to specialized medical professionals is sporadic at best.[7]

For individuals with hemophilia, consistent treatment is crucial to prevent bleeding episodes and to manage the disease effectively. In stable healthcare settings, regular administration of clotting factor concentrates can help manage the condition. However, in the volatile settings that refugees often inhabit, such consistent treatment regimens are difficult, if not impossible, to maintain. This lack of regular treatment can lead to frequent and severe bleeding episodes, resulting in joint damage, chronic pain, and other health complications. Over time, these complications can become debilitating, leading to disability and significantly impacting the quality of life. In the most severe cases, where bleeding episodes are not promptly or adequately treated, the consequences can be as dire as life-threatening hemorrhages, leading to premature death.[8]

Beyond the physical implications, the mental health burden borne by refugees with hemophilia or other rare diseases is profound.[9] The psychological stress of managing a long-term illness is significantly compounded in the context of displacement.[10] The instability and uncertainty that define refugee life can exacerbate feelings of anxiety, helplessness, and despair.[11] The continuous struggle to access care, coupled with the fear of unmanageable bleeding episodes, can lead to chronic stress and mental health disorders, including depression and post-traumatic stress disorder (PTSD).[12]

Moreover, this psychological distress is often not addressed adequately in refugee settings, where mental health services are typically under-resourced and overshadowed by more immediate physical health needs.[13] This neglect can lead to a vicious cycle where unaddressed mental health issues further impede the ability to manage physical health conditions effectively, thereby worsening overall health outcomes.

The complexities of managing rare diseases like hemophilia in refugee contexts highlight a critical gap in global healthcare provision. The inability to access specialized care and consistent treatment not only exacerbates physical health problems but also imposes a significant mental health burden. This dual challenge underscores the need for comprehensive healthcare strategies that consider both the physical and psychological needs of refugees living with chronic or rare diseases.

Moreover, the healthcare challenges faced by refugees are significantly compounded by social determinants such as poverty, education, and limited resource access.[14] Many refugees, uprooted from their homes and livelihoods, find themselves in a state of financial instability, which severely restricts their ability to afford even basic medical care. This economic hardship is further exacerbated in countries where refugees are not permitted to work legally or have limited opportunities for employment.[15] Consequently, the cost of healthcare, particularly for chronic and rare diseases that require specialized and ongoing treatment, becomes an insurmountable barrier for many.

Education, or the lack thereof, also plays a crucial role in healthcare access. In many cases, refugees may have limited health literacy, which affects their ability to understand and navigate complex healthcare systems, adhere to treatment regimens, or even recognize the severity of their health conditions.[16] This lack of understanding can lead to delays in seeking care, mismanagement of chronic conditions, and increased vulnerability to health complications.

Access to resources extends beyond financial means and includes the availability and accessibility of healthcare services. In refugee settings, there is often a shortage of healthcare facilities and professionals, particularly those equipped to manage chronic conditions like hemophilia.[17] Additionally, language barriers and cultural differences can impede effective communication between refugees and healthcare providers, leading to misdiagnoses, inappropriate treatments, and a general mistrust of the healthcare system.[18]

The legal status of refugees further complicates their access to healthcare.[19] In many host countries, refugees may have restricted access to health services due to their legal status or fear seeking care due to potential legal repercussions.[20] This situation is particularly challenging for undocumented refugees, who are often excluded from health systems and live in constant fear of deportation, making them less likely to seek medical help even in dire situations.

Given the multifaceted challenges faced by refugees with hemophilia, this paper seeks to explore a critical research question: “How can interdisciplinary approaches effectively address the myriad challenges associated with managing hemophilia, a rare and chronic disease, in refugee populations?” This question probes into the depths of an integrated healthcare approach, examining how different fields—ranging from clinical medicine to social sciences—can converge to address the unique needs of refugees with hemophilia. It seeks to understand the dynamics of providing specialized care in the context of displacement, the role of public health in ensuring accessibility and continuity of care, and the necessity of tailoring these approaches to the diverse cultural and social backgrounds of refugee populations.

This paper posits that effectively managing hemophilia in refugee populations requires a nuanced, comprehensive, interdisciplinary approach. This approach necessitates integrating medical and pharmaceutical expertise—ensuring access to vital medications and specialized care. However, it extends beyond traditional medicine to encompass public health strategies that address the broader health needs of these populations, including preventive care and health education.

Psychological support is another critical element, acknowledging the significant mental health burden associated with chronic disease management amidst the uncertainties of refugee life. Sociological insights are essential to understanding the social determinants of health that affect access to care, such as socioeconomic status, cultural barriers, and the impact of displacement on family and community structures. Political and legal considerations are also paramount, including developing policies that respect refugees’ rights and unique needs and address the legal challenges they face in accessing healthcare. Additionally, economic factors, such as funding constraints and the cost-effectiveness of healthcare delivery in resource-limited settings, must be considered to ensure sustainable solutions.

Furthermore, ethical considerations, including issues of healthcare equity and justice, are crucial in ensuring that refugees with hemophilia receive care that is not only effective but also fair and respectful of their rights and dignity. Lastly, incorporating technological innovations, such as telemedicine and digital health records, can enhance the accessibility and quality of care in challenging and resource-constrained environments.

This comprehensive interdisciplinary approach is vital for addressing the diverse healthcare needs of refugees with hemophilia and ensuring that healthcare delivery is equitable, efficient, and sustainable, even in the most challenging environments.

 

2.     Hemophilia: An Overview

2.1.      Medical Perspectives

Hemophilia, a significant medical challenge, is an X-linked heritable coagulopathy that primarily affects males.[21] It is characterized by deficiencies in specific clotting factors, leading to a spectrum of clinical manifestations related to abnormal bleeding.[22] The two most common forms of the disorder are Hemophilia A and Hemophilia B, resulting from deficiencies in clotting factors VIII and IX, respectively.[23] Recurrent bleeding into joints, known as hemarthrosis, is a common and debilitating complication of hemophilia. This repeated joint bleeding can lead to chronic synovitis and hemophilic arthropathy, causing severe pain and swelling and eventually leading to joint damage and disability if not adequately treated.[24] The severity of these episodes often correlates with the degree of factor deficiency, with more severe cases prone to spontaneous bleeds, particularly in high-motion joints like knees, elbows, ankles, and even muscles.

One of the most clinically significant outcomes of these bleeding incidents is chronic synovitis, an inflammation of the synovial membrane in joints.[25] If not adequately managed, this can progress to hemophilic arthropathy—a degenerative joint disease caused by the cumulative damage from recurrent bleeds.[26] This condition significantly impacts joint structure and function, leading to deformities, reduced mobility, and severe pain, profoundly affecting the quality of life. The pathogenesis of hemophilic arthropathy is multifactorial, impacting not only the synovium but also cartilage, bone, and blood vessels surrounding the joints.[27]

Furthermore, hemophilia patients often experience musculoskeletal changes such as muscle atrophy, reduced strength, and impaired joint function, potentially leading to permanent disability.[28] Contractures and altered biomechanics of the limbs are common in severe cases. Additionally, internal bleeding episodes, particularly intracranial hemorrhages, present significant life-threatening risks.[29] The chronic nature of hemophilia and its physical complications also bear a substantial psychosocial burden, affecting the emotional well-being, social interactions, and overall quality of life of those afflicted.[30]

The severity of hemophilia is classified based on the activity level of the clotting factor in the blood, which significantly dictates the clinical presentation and management approach. Individuals with less than 1% normal factor activity are considered to have severe hemophilia, while those with 1-5% are moderate cases, and more than 5% but less than 40% are categorized as mild.[31] This spectrum of severity underscores the varied clinical manifestations and challenges in managing hemophilia.

The implications of this genetic pattern are profound, especially in settings like refugee camps or regions with limited healthcare infrastructure. In such environments, the ability to perform genetic testing and provide comprehensive genetic counseling is often constrained. This limitation makes understanding and communicating hemophilia’s risks and inheritance patterns even more crucial. Families in these settings may not have access to the same medical knowledge or genetic testing resources available in more developed healthcare systems. Therefore, healthcare providers and educators working in these areas play a vital role in imparting knowledge about the inheritance of hemophilia to at-risk populations.

This genetic understanding is crucial not only for the families directly affected by hemophilia but also for broader community health strategies. Recognizing potential carriers and individuals at risk allows for better resource allocation, targeted health education, and preparation for the potential healthcare needs of individuals with hemophilia. Additionally, understanding the genetic basis of hemophilia aids in developing management strategies tailored to these communities’ specific needs and constraints. It also underscores the importance of incorporating genetic education into public health initiatives, particularly in regions where hereditary conditions like hemophilia remain a significant challenge.

2.2.     Public Health Perspectives

The public health challenges in managing hemophilia are profoundly amplified in settings where limited resources, infrastructural constraints, and the aftermath of crises burden healthcare systems.[32] A public health approach to hemophilia care involves addressing the immediate medical needs through prophylaxis and treatment and ensuring equitable access to these lifesaving interventions across various populations.[33] The global disparity in the availability of clotting factor concentrates, a critical component in the prophylactic management of hemophilia, points to a significant public health concern.[34] In developing countries and regions affected by conflict, the scarcity of these treatments exacerbates the health inequities faced by individuals with hemophilia.

Acute management of hemophilia with replacement therapy during bleeding episodes is a cornerstone of care that becomes a public health challenge when healthcare services are disrupted.[35] In resource-limited settings, adapting treatment protocols to the available resources is imperative.

The multidisciplinary nature of hemophilia care, ideally involving hematologists, physiotherapists, and other specialists, represents a model of comprehensive care that is challenging to implement in many public health scenarios, especially in refugee camps and remote areas.[36] This highlights the need for public health strategies that are adaptable, scalable, and can be implemented with the available workforce, which may require training and capacity-building initiatives.

Within the public health framework, managing hemophilia in resource-limited environments also requires a focus on early recognition and intervention. Healthcare providers must be trained to identify signs of bleeding disorders and provide appropriate first-line management. Public health programs must emphasize the education of patients and caregivers, focusing on the importance of early treatment of bleeding episodes and basic joint protection techniques to prevent complications.

The overarching challenge in the public health management of hemophilia is ensuring that individuals, regardless of their geographic location or socioeconomic status, have access to the necessary treatments and support services. This requires a concerted global effort to improve healthcare infrastructure, foster international partnerships, and develop policies that facilitate the equitable distribution of healthcare resources.

In crisis situations, such as wars, natural disasters, or mass migrations, public health responses must be nimble and robust, ensuring continuity of care. Strategies must account for the mobility of populations and the potential for supply chain disruptions, with contingency plans to provide care under adverse conditions. Moreover, managing hemophilia transcends individual patient care and encompasses a broader approach that considers systemic healthcare challenges, social determinants of health, and the need for policy-driven solutions to ensure equitable and sustainable care for all affected by this chronic condition.[37]

In the harsh realities of war and conflict, the devastation of healthcare infrastructure and the forced displacement of populations pose severe barriers.[38] Such turmoil often leads to scarce access to essential treatments like clotting factor concentrates. The disintegration of care continuity leaves individuals at high risk for unmanaged bleeding, joint damage, and enduring pain due to the disease’s complications.

Similarly, natural disasters immensely strain healthcare systems, shifting the focus and resources to immediate survival and neglecting chronic disease management.[39] This neglect can result in individuals with hemophilia losing access to critical medical support, exacerbating their health conditions. Additionally, the physical and psychological trauma caused by such disasters may heighten the risk of bleeding episodes, adding layers of complexity to their health challenges.

Mass migrations introduce further obstacles for refugees with hemophilia. In host countries, they may face significant healthcare barriers due to legal constraints, language differences, and cultural disparities.[40] The perilous journeys they undertake are fraught with risks of injury and bleeding episodes. At the same time, the lack of continuity in care and unfamiliar healthcare landscapes can lead to treatment delays and complications.

This scenario underscores the imperative of integrating hemophilia care within the broader healthcare response during crises. For refugees and displaced individuals with hemophilia, there is a pressing need for specialized medical interventions, sustained care, and unhindered access to medications—needs that transcend geographic and political boundaries. Healthcare providers and humanitarian organizations must recognize the specialized needs of this group, ensuring that chronic conditions like hemophilia are addressed in emergency health responses. This comprehensive care is a matter of health efficacy and human rights, affirming equitable healthcare access for all individuals, irrespective of their circumstances.

The public health perspective thus emphasizes the need for a healthcare system that is responsive, adaptable, and inclusive, particularly in the management of chronic conditions like hemophilia in crisis-affected regions. It calls for a systemic approach incorporating emergency response planning, health policy reform, and international collaboration to address the healthcare disparities exacerbated by crises and protect the health rights of the most vulnerable populations.

2.3.     Epidemiologic Perspectives

Understanding the epidemiology of genetic disorders and rare diseases within the Syrian population is essential for comprehending the complex health challenges faced in the region. This perspective sheds light on the influence of cultural practices, such as consanguinity, as a primary driver of the high prevalence of these conditions. Syria ranks among the highest in the world in terms of consanguineous marriages, which significantly elevates the risk of autosomal recessive disorders.[41] These disorders encompass a broad spectrum of ailments, including metabolic disorders, hemoglobinopathies like thalassemia and sickle cell disease, and various congenital malformations. With consanguinity rates between 30% and 40%, the population experiences an increased burden of deleterious recessive genes, resulting in a corresponding rise in genetic disorders.[42]

Prior to the conflict, studies indicated a higher prevalence of inherited disorders in Syria compared to global averages, reflecting the genetic and societal customs prevalent in the region.[43] Hemophilia, a representative genetic disorder, provides a vivid example. The estimated occurrence stands at 17.1 cases per 100,000 males for hemophilia A, encompassing all severity levels (with 6.0 cases being severe), and 3.8 cases per 100,000 males for hemophilia B, including all severity levels (with 1.1 cases being severe).[44] When considering prevalence at birth, it is estimated to be 24.6 cases per 100,000 males for hemophilia A (with 9.5 cases being severe) and 5.0 cases per 100,000 males for hemophilia B (with 1.5 cases being severe).[45] In Syria, with a population of approximately 22,125,249, epidemiological projections would expect around 2,212 individuals with hemophilia. This suggests that the current figures may be indicative of underdiagnosis or underreporting attributed to healthcare access barriers stemming from the conflict. These barriers include the disruption of medical services and the challenges of conducting comprehensive health surveys in such conditions.

The underdiagnosis issue is further exacerbated in refugee settings, where routine health monitoring and specialized treatments face significant limitations.[46] Refugees with hemophilia are at an elevated risk of complications due to the lack of consistent treatment, with their mobility and legal status adding complexity to healthcare access. The ongoing need for factor replacement therapy varies depending on the severity of the condition.[47] Many individuals with mild hemophilia go undiagnosed until a significant bleeding event, like dental extraction or surgery, occurs, highlighting a diagnostic gap.[48] This gap implies that the actual number of individuals with hemophilia may be higher than reported, especially for those with milder forms who have not experienced significant bleeding episodes.

Furthermore, the 2022 World Federation of Hemophilia Annual Global Survey identified 435 individuals with other bleeding disorders.[49] These patients, along with the multitude of others affected by rare genetic disorders, encounter similar diagnostic and treatment challenges. Recognizing and addressing their healthcare needs is paramount, particularly for those residing in refugee camps where healthcare resources are scarce and specialized care is often absent.

This data underscores the urgent requirement for enhanced healthcare strategies tailored to the unique challenges of diagnosing and managing hemophilia and other bleeding disorders in conflict-affected regions. These strategies should prioritize the development of healthcare infrastructure, the training of medical personnel in the diagnosis and management of bleeding disorders, and the establishment of systems to ensure continuous care for displaced populations. International support and collaboration are also essential in bridging these healthcare gaps, ensuring that all individuals with hemophilia or other bleeding disorders, regardless of their displacement status, receive the necessary care.

Displacement and the ensuing chaos often lead to underdiagnosis or delayed diagnosis of genetic conditions, creating a gap in epidemiological data.[50] This gap complicates efforts to fully understand the scope and impact of these disorders among displaced populations. Additionally, the bottleneck effect in refugee populations, particularly in isolated settings like refugee camps, can amplify the prevalence of specific genetic disorders due to genetic isolation, leading to a higher likelihood of recessive genes being expressed.[51]

Focused epidemiological research and surveillance on genetic disorders and rare diseases are imperative. Collecting, analyzing, and interpreting data is essential to comprehensively understanding these conditions’ prevalence, distribution, and determinants. This knowledge informs public health policies and healthcare provision strategies. Continuous epidemiological research and surveillance are vital to effectively address the healthcare needs of this vulnerable population, particularly in the context of ongoing conflict and displacement, highlighting the necessity of an interdisciplinary approach in managing complex health needs like hemophilia in refugee populations.

3.     Manifestations of Untreated Hemophilia in Refugee Populations

3.1.       Clinical Perspectives

In refugee populations, individuals with untreated hemophilia face a particularly precarious situation. The lack of regular treatment and prophylaxis due to disrupted healthcare systems, limited access to medical resources, and the general instability of refugee environments leads to severe clinical complications. These complications pose immediate health risks and have long-lasting effects on the individual’s overall well-being and quality of life.

The inherent risks of hemophilia are significantly amplified in refugee settings. The absence of treatment, crucial for preventing bleeding episodes, means individuals are constantly at risk of spontaneous and potentially life-threatening bleeds.[52] Such environments often lack the infrastructure to provide timely and appropriate medical interventions, critical for managing acute bleeding episodes effectively. These episodes can occur spontaneously or as a result of minor injuries, which are more likely in the often harsh living conditions of refugee settings. The inability to promptly treat these bleeds can lead to severe complications, including joint damage, muscle atrophy, and, in extreme cases, life-threatening hemorrhages.

The lack of treatment for joint bleeds in hemophilia can lead to chronic synovitis and the development of hemophilic arthropathy, resulting in persistent joint pain, swelling, and reduced mobility.[53] Over time, recurrent joint damage can lead to chronic pain and significant physical disability, limiting the individuals’ ability to perform daily activities and reducing their overall quality of life.[54]

The psychological impact of living with untreated hemophilia in a refugee setting cannot be overstated. The constant fear of bleeding episodes, coupled with physical pain and disability, can lead to significant mental health issues, including anxiety, depression, and post-traumatic stress disorder.[55] These psychological burdens are often compounded by the general stress and trauma associated with being a refugee.

Another challenge in these settings is the lack of specialized hemophilia care and patient education.[56] Healthcare providers in refugee camps may not have the expertise or resources to manage hemophilia effectively. Additionally, patients and their families often lack access to education about managing the condition, leading to a higher risk of complications and a decreased ability to advocate for appropriate care.

The absence of regular treatment and prophylaxis for hemophilia in refugee populations leads to a range of severe clinical complications. These complications pose immediate health risks and have profound and long-lasting effects on individuals’ physical, mental, and emotional well-being. Table 3.1 outlines the common complications of untreated hemophilia:

Table 3.1: Complications of Untreated Hemophilia
Complication	Description	Impact	Management Challenges in Refugee Settings
Joint Problems and Hemophilic Arthropathy	Chronic joint disease due to bleeding into joints.	Accelerated joint damage, pain, reduced mobility, disability	Limited access to prophylactic treatment
Spontaneous Bleeding Episodes	Unpredictable bleeding, including life-threatening cases.	Prolonged recovery, increased risks, potential fatalities	Limited availability of clotting factor concentrates
Inhibitors	Antibodies neutralizing clotting factors.	Reduced treatment effectiveness, complications.	Management complexities with limited resources
Musculoskeletal Complications	Chronic joint damage, mobility impairment.	Decline in overall health.	Challenges in providing prophylactic treatment
Pseudotumors	Severe complications from soft tissue bleeds.	Complex medical intervention, potential surgery.	Exceedingly challenging management
Fractures	Risk of fractures due to joint issues.	Factor concentrate, surgery, rehabilitation needed.	Resource limitations for comprehensive care
Blood-borne Infection-related Complications	Historical infection risks persist.	Lingering infection risks, especially in older patients.	Limited access to modern and safe treatments
Table 3.1 Has been modified from Srivastava et al.[57]

 

The absence of proper treatment for hemophilia leads to a significant and widespread issue of chronic joint disease, medically termed hemophilic arthropathy. This condition primarily results from repeated bleeding episodes in joints such as the knees, elbows, and ankles – areas that are particularly susceptible due to their frequent use and vulnerability to trauma.

In the context of refugee settings, where access to prophylactic treatments like clotting factor concentrates is severely limited or non-existent, the natural progression of joint disease is markedly accelerated.[58] The repeated bleeding in the joints, without timely and appropriate intervention, causes a cascade of internal damage. Each bleeding episode leads to increased inflammation and swelling within the joint, followed by a destructive cycle that progressively damages cartilage and bone.

The relentless cycle of bleeding and inflammation in the joints leads to chronic pain and swelling where the discomfort and the associated swelling significantly limit joint mobility and functionality. [59] For individuals suffering from hemophilic arthropathy, even simple daily activities can become challenging, contributing to an overall decline in their quality of life.

One of the most concerning aspects of untreated hemophilia in these settings is the high risk of permanent disability. Chronic synovitis, or the persistent inflammation of the synovial membrane lining the joints, leads to joint deformities over time.[60] These deformities, coupled with the degradation of cartilage and bone within the joint, can result in irreversible damage. Such damage not only restricts movement but can also lead to permanent physical disabilities, rendering the individual dependent on others for basic care and mobility.

This continuous deterioration of joint health extends to a broader range of physical capabilities, affecting the individual’s ability to work, engage in physical activities, and maintain independence.[61] The psychological impact of this physical decline should not be underestimated, as it can lead to feelings of helplessness, depression, and social isolation. Furthermore, the management of hemophilic arthropathy requires specialized care, including access to clotting factor concentrates, pain management strategies, and physical therapy. However, in refugee settings, such specialized care is often unavailable. This lack of access to appropriate medical interventions not only exacerbates the physical symptoms but also underscores the urgent need for comprehensive healthcare solutions for refugees with hemophilia.

Untreated hemophilia in refugee populations leads to a rapid progression of chronic joint disease, characterized by debilitating pain, swelling, and the risk of permanent disability due to joint deformities. This condition profoundly impacts the affected individuals’ physical function and overall quality of life, highlighting the critical need for improved access to hemophilia care in these challenging environments.

3.2.     Psychological Perspectives

The psychological perspective on untreated hemophilia in refugee populations underscores the urgent need for comprehensive care that includes mental health support and psychosocial interventions. Addressing these psychological and social challenges is critical to improving the overall well-being and quality of life of those affected by hemophilia in these complex and challenging environments.[62] Integrating mental health care into the management of hemophilia in refugee settings is not only a healthcare imperative but also a vital aspect of humanitarian response.[63]

One prominent aspect of this multifaceted challenge is the array of mental health hurdles that individuals with untreated hemophilia encounter. Chronic pain, stemming from recurrent bleeding and joint damage, often becomes an unrelenting companion, transcending physical discomfort to encompass psychological distress. This persistent battle with pain can lead to heightened levels of anxiety, frustration, and depression, significantly affecting their mental well-being.[64] The unpredictability and severity of bleeding episodes only serve to exacerbate this psychological burden, fostering a pervasive sense of uncertainty and helplessness that can become emotionally overwhelming.

For refugees living with hemophilia, the experience of trauma takes on an added layer of complexity. The cumulative effect of war, displacement, and the stress of managing a chronic disease in unstable conditions can trigger Post-Traumatic Stress Disorder (PTSD).[65] This complex trauma often remains unaddressed in refugee settings due to the scarcity of mental health resources, further compounding the psychosocial challenges they face. [66]

Another dimension of the psychosocial impact of untreated hemophilia lies in the realm of social interactions. The physical limitations imposed by the condition can result in social isolation, as individuals may find themselves increasingly alienated.[67] They may be unable to participate in community activities or adhere to cultural norms due to their health condition. This isolation can intensify feelings of loneliness and contribute to depressive symptoms, further diminishing their overall quality of life.[68]

Beyond the realm of mental health, the quality of life issues that accompany untreated hemophilia are equally pressing. Hemophilia-related joint damage frequently leads to diminished mobility, severely restricting an individual’s capacity to perform daily activities independently. This loss of independence can affect self-esteem and foster feelings of dependency, impacting both mental health and perceived self-worth.[69]

Furthermore, the financial burden associated with managing hemophilia adds to the overall financial strain experienced by families, heightening stress and hardship.[70] At the same time, education and employment barriers hinder access to opportunities, curbing personal development and economic stability. Stigma and discrimination surrounding hemophilia can lead to social exclusion, impeding social interactions and access to support, intensifying feelings of isolation and marginalization.[71]

Despite these profound challenges, it is important to note that many individuals with hemophilia demonstrate remarkable resilience.[72] They develop adaptive coping mechanisms, such as seeking social support, problem-solving, and finding meaning in adversity.[73] These strategies play a crucial role in maintaining mental health and enhancing the quality of life under these demanding circumstances.

4.     Barriers to Hemophilia Treatment Among Refugees

4.1.      Health System and Policy Perspectives

The ongoing global refugee crisis, representing the largest mass migration since World War II, presents profound healthcare challenges to host countries like Lebanon.[74] These nations face the daunting task of addressing a rapidly growing refugee population’s diverse and complex health needs, exposing significant systemic barriers hindering effective healthcare delivery.

Lebanon serves as a crucial case study, having experienced a massive influx of refugees, primarily from Syria, resulting in a remarkable over 25% increase in its population.[75] This demographic shift placed immense pressure on Lebanon’s healthcare infrastructure, which was strained due to internal challenges and limited resources.

A notable aspect of this crisis is the wide range of health issues the refugee population presents. Many refugees arrive with pre-existing conditions, including chronic diseases like hypertension and diabetes, compounded by the psychological trauma of displacement.[76] Additionally, refugees with specialized medical needs, such as hemophilia, add complexity to the healthcare challenges.

Lebanon’s healthcare system, characterized by high privatization and reliance on user fees, faces difficulties meeting the needs of both its native population and the additional demands posed by the refugee influx.[77] Refugees often encounter barriers to healthcare access, including financial constraints, language and cultural differences, and limited availability of specialized services. Moreover, the absence of formal refugee camps in Lebanon leads to refugees settling in various regions across the country, complicating their access to medical facilities and consistent care.[78]

Lebanon’s response to the Syrian refugee crisis serves as an example of the immense strain placed on healthcare systems in refugee settings. An important aspect of Lebanon’s approach is its policy against establishing formal refugee camps, resulting in the widespread dispersal of refugees, particularly in impoverished regions. While designed to address certain concerns, this unique strategy introduces complexities, especially regarding access to essential services, including healthcare.[79]

This dispersal policy can be attributed to several factors. Lebanon’s historical experience with long-standing Palestinian refugee camps influenced the government’s stance, aiming to prevent the creation of similar long-term settlements.[80] Additionally, concerns about security and social integration drove the dispersal policy, with the belief that dispersing refugees minimizes security risks and promotes integration into local communities.[81]

However, this policy has unintended consequences, especially in healthcare access. Dispersed settlements often result in refugees settling in overcrowded urban areas or makeshift accommodations lacking adequate sanitation and healthcare infrastructure, further exacerbating their challenges.[82]

Regarding healthcare, the dispersal of refugees leads to several issues:

Table 4.1: Healthcare Challenges for Refugees in Lebanon’s Healthcare System
Challenges	Description
Limited Access	Many refugees find themselves in remote areas, far from healthcare facilities, posing a significant barrier to essential medical services.
Overcrowding	In urban areas with refugee concentrations, overcrowding leads to increased competition for limited healthcare resources, longer wait times, and reduced access to care.
Strained Local Resources	Regions with high refugee populations strain local healthcare facilities, affecting care quality and availability for refugees and host communities.
Financial Barriers	Lebanon’s healthcare system relies on private providers and out-of-pocket payments, which can be challenging for refugees facing financial constraints.
Language and Cultural Barriers	Language differences and cultural variations can hinder effective communication between refugees and healthcare providers, potentially leading to misdiagnoses.
Table 4.1 Has been modified from Doocy et al.[83]

Addressing these challenges requires a comprehensive approach that considers the unique circumstances of each refugee and leverages international cooperation to ensure equitable healthcare access for all.

Lebanon’s healthcare system faces significant challenges driven by privatization, an aging population, a rising burden of chronic diseases, and the Syrian refugee crisis. These challenges necessitate comprehensive reforms focusing on equitable healthcare access, substantial infrastructure investments, disease prevention, workforce development, and international collaboration.[84]

Refugees with hemophilia encounter distinct challenges within the Lebanese healthcare system. Hemophilia demands specialized treatment, ongoing medical supervision, and consistent access to clotting factor products. Lebanon’s healthcare system, with limited specialized providers, struggles to meet these needs, leading to delays in diagnosis and treatment.[85] Moreover, refugees with hemophilia require continuous medical supervision, including regular assessments of clotting factor levels and monitoring for bleeding episodes. Gaps in this care can put these individuals at risk of inadequate treatment and health deterioration.[86] Moreover, access to clotting factor products poses challenges for refugees due to cost and supply shortages.[87] This, coupled with persistent shortages of medical supplies in Lebanon, compromises the healthcare of refugees with hemophilia.

These challenges have profound implications, increasing the risk of bleeding complications, joint damage, chronic pain, and life-threatening episodes, severely impacting physical health. Managing a chronic condition in a resource-constrained environment also contributes to psychological stress and anxiety, highlighting the need for comprehensive healthcare support.

5.     Frontline Stories: Navigating Health Struggles

5.1.       Narrative Medicine Perspectives

Amidst the relentless turmoil of the Syrian conflict, three brothers, Hussein, Muhammad, and Khodar, underwent a profound and agonizing transformation due to their battle against hemophilia. Before the conflict, the city of Aleppo boasted a once-functional healthcare system that was essential for their hemophilia treatments. In times of peace, these individuals could rely on their local healthcare facilities for regular treatments, allowing them to manage their condition and lead relatively normal lives.

However, as the conflict intensified, the healthcare system in Aleppo, like many other essential services, began to disintegrate. Hospitals and clinics, once beacons of hope, became casualties of war, leading to the closure of medical facilities, shortages of medical supplies, and the flight of healthcare professionals. This deterioration had devastating consequences not only for Hussein, Muhammad, and Khodar but also for the over 1,000 people who suffered from hemophilia within Syria.

The disintegration of the healthcare system meant that their access to clotting factor concentrates became sporadic and unreliable. The very lifeline that had allowed them to control their condition was severed, leaving them acutely vulnerable to life-threatening bleeding episodes. In a war-torn environment where safety and predictability were luxuries of the past, these individuals found themselves facing the constant specter of debilitating bleeds, chronic pain, and the very real risk of severe complications. Their battle against hemophilia took on a new and even more precarious dimension in the midst of conflict, where even the most basic medical care became a rare commodity. The story of Hussein, Muhammad, and Khodar serves as a poignant reminder of the profound challenges faced by individuals with chronic conditions during times of crisis.

In the face of conditions in Aleppo that had become increasingly unbearable due to the intensification of the conflict, Hussein, Muhammad, and Khodar’s family confronted an excruciating and life-altering decision. Their primary motivation was a desperate search for safety and improved medical care, both of which had become nearly unattainable in their war-torn homeland. This led them to embark on a perilous journey to Lebanon, a voyage filled with unimaginable dangers that compounded the already significant medical risks they faced due to hemophilia.

Leaving behind the only home they had known, they were forced to navigate through conflict zones, where violence and uncertainty lurked around every corner. The journey itself posed a significant threat to their health, as any minor injury or bleeding episode could quickly escalate into a life-threatening emergency. This arduous trek symbolized the lengths they were willing to go to seek the most basic human necessities: safety, healthcare, and the opportunity for a better life. Sadly, Hussein, Muhammad, and Khodar’s mother and father were killed during this journey, leaving them with only their grandmother to care for them.

Upon reaching the relative safety of Lebanon’s borders, the family’s ordeal was far from over. Instead, they were confronted with the harsh realities of life in refugee camps, which were ill-equipped to meet the specific and specialized medical needs of hemophilia patients. These overcrowded and resource-strained camps introduced new challenges in their quest for stable healthcare.

In these makeshift settlements, where the most vulnerable among refugees sought shelter and sustenance, access to specialized medical care became scarce. The camps lacked the essential infrastructure and medical facilities necessary to manage chronic conditions like hemophilia effectively. With limited access to clotting factor concentrates and specialized care, the three brothers faced ongoing uncertainty and vulnerability. At one harrowing juncture during their ordeal, the eldest brother, holding only one remaining vial of clotting factor for all three of them, administered the lifesaving infusion to Khodar. Khodar had been enduring excruciating pain due to an ongoing and relentless bleeding episode into his knee. The intensity of this pain left him immobilized, forcing him to remain on the frigid concrete floor of their modest shelter.

Globally, hemophilia is a significant health concern, yet it often receives less attention in regions grappling with infectious diseases and malnutrition. This trend is evident in refugee settings, where emergency care takes precedence over chronic disease management. The story of Hussein, Muhammad, and Khodar in Lebanese refugee camps underscores the complex challenges of providing adequate healthcare to refugees with chronic conditions like hemophilia. It emphasizes the urgent need for a holistic, interdisciplinary approach in humanitarian medicine to address immediate health concerns and ensure consistent, effective chronic disease management.

5.2.     Legal Perspectives

The admission of Syrian refugees into Lebanon is subject to stringent restrictions, primarily categorized into specific groups, including tourists, business travelers, students, transiting individuals, displaced persons, medical treatment seekers, embassy appointment holders, and those with Lebanese sponsors.[88] However, each category demands the presentation of specific documents and necessitates approval from the Ministry of Social Affairs and the Ministry of Interior[89] Notably, these entry requirements are accompanied by varying financial criteria, which, in some cases, may result in the exclusion of economically disadvantaged Syrians.[90] One striking omission is the absence of specific categories for individuals fleeing armed conflict or persecution. Consequently, many refugees must resort to irregular border crossings to circumvent these formidable restrictions.[91]

Furthermore, Syrian refugees in Lebanon encounter formidable challenges when attempting to renew their legal status. The process of residency renewal, mandated every six months, imposes a substantial fee amounting to USD 200.[92] Moreover, applicants are obliged to fulfill specific requirements, which encompass commitments related to housing, the presentation of certified documents, and evidence of financial stability.[93] Notably, refugees registered with the United Nations High Commissioner for Refugees (UNHCR) face additional restrictions, including a pledge not to engage in gainful employment.[94] The sponsorship system, designed to facilitate residency renewal, often proves to be a considerable obstacle for many refugees, significantly limiting their capacity to maintain legal permits.

The 2015 Policy on Syrian Displacement, with its stated aim to “manufacture vulnerability,” has had profound repercussions on the legal status and rights of various groups of Syrian refugees in Lebanon.[95] A significant number of Syrian refugees now find themselves without valid legal status in Lebanon, thereby increasing their vulnerability to a multitude of risks. This limited legal status severely restricts their access to essential services, including healthcare and education, and impedes their ability to register with UNHCR.[96] Refugees lacking valid residency permits often live in fear of arrest, detention, and abuse at various checkpoints. Additionally, the sponsorship system in place for Syrian nationals can, in some instances, lead to exploitation and abuse.[97] Consequently, some refugees are compelled to seek employment through illegal means.[98]

This comprehensive overview of the legal perspectives concerning Syrian refugees in Lebanon highlights their multifaceted challenges regarding entry, residency renewal, and their distinct legal status based on origin. These challenges have profound implications for the well-being and safety of Syrian refugees in the country.

The Responsibility to Protect (RtoP) concept, adopted by UN member states in 2005, underscores the responsibility of the international community to protect populations from mass atrocities when national authorities fail to do so.[99] Syrian authorities are currently unable and unwilling to protect their population from mass atrocities, necessitating the acceptance of Syrian citizens as refugees until peace and safety can be restored in Syria. A government’s duty to protect its own citizens is crucial, but it should not be misused as a justification for denying entry to refugees facing real threats. The international community is legally bound to meet the obligations and responsibilities, emphasizing the need to provide assistance and protection to Syrian refugees and to combat discrimination based on religious belief or country of origin.[100] Additionally, a moral and ethical obligation exists to safeguard vulnerable populations, particularly children, in times of crisis.[101]

6.     Strategies for Improving Hemophilia Care in Refugee Settings

6.1.      Healthcare Innovation and Systems Strategy Perspectives

In light of the critical need to address healthcare disparities among refugees, it is imperative to explore innovative approaches. These approaches not only leverage international support and funding to bolster healthcare infrastructure but also harness the power of technology. Implementing telemedicine, for example, can revolutionize healthcare delivery by enabling remote diagnosis, consultation, and management of chronic conditions, overcoming geographical barriers.[102] This approach is particularly valuable for refugees in remote areas with limited access to healthcare facilities. Telemedicine allows healthcare providers to monitor and provide guidance to patients in real-time, ensuring timely interventions.

Moreover, mobile health applications can complement telemedicine by facilitating health monitoring and education for refugees. These tools empower individuals to manage their conditions, track symptoms, and access vital health information from their mobile devices.[103] Moreover, mobile applications can provide culturally sensitive information in multiple languages, making them accessible to a diverse refugee population.

Utilizing digital platforms and e-learning tools for training enhances healthcare providers’ ability to effectively address refugees’ unique needs.[104] These tailored online modules ensure that patients, family members, and healthcare workers in refugee settings receive continuous education, keeping them up-to-date with the latest advancements in hemophilia management. By strengthening the skills and knowledge of healthcare workers, this approach improves the quality of care for hemophilia patients and reduces the risk of complications.

Expanding on these concepts is also the idea of mobile clinics equipped with telehealth capabilities, which bring healthcare services directly to the patient, ensuring regular monitoring and treatment administration for conditions like hemophilia.[105] These clinics are particularly crucial for refugees living in underserved regions with limited access to healthcare facilities or those residing in refugee camps. Mobile clinics can serve as a lifeline for hemophilia patients, offering essential clotting factor infusions, check-ups, and self-management education. Additionally, advocating for policy reforms integrating digital health records and telemedicine into the existing healthcare framework can streamline care delivery. Such policy changes could ensure patient information is accessible across different healthcare providers and locations, ultimately improving the continuity of care for refugees with hemophilia.

Furthermore, integrating cost-efficient and minimally invasive techniques becomes critical in resource-constrained environments. These approaches, including the utilization of portable ultrasound and chemical synovectomy, present innovative solutions that align seamlessly with the unique healthcare challenges prevalent in such areas.[106]

Portable ultrasound technology emerges as a pivotal game-changer in this context. Its affordability, portability, and minimal training requirements make it a compelling tool for healthcare providers. Point-of-care musculoskeletal ultrasound (POC-MSKUS) equips them with a real-time diagnostic capability to assess joint health in hemophilia patients, especially for conditions like synovitis and osteochondral damage, which are key indicators of disease progression and clinical/subclinical joint bleeding.[107]

What truly sets POC-MSKUS apart is its adaptability for field use, which is paramount in regions where traditional imaging facilities are rare. This capacity for early detection and joint abnormality assessment empowers healthcare providers to deliver timely interventions, significantly reducing the risk of long-term joint damage and associated disability.[108]

Adding to its appeal is the cost-effectiveness of ultrasound technology, rendering it accessible even in financially constrained settings. Furthermore, its minimal training requirements ensure that healthcare workers can rapidly acquire the skills to operate these devices effectively, thus enhancing their feasibility in resource-constrained environments.

In addition to ultrasound technology, chemical synovectomy is a beacon of innovation and minimal invasiveness. This procedure, involving the injection of sclerosing agents into affected joints, directly addresses inflammation and prevents further joint damage.[109] The cost-effectiveness, simplicity, and practicality of chemical synovectomy render it an ideal solution for regions lacking advanced medical infrastructure. Its minimal resource requirements and reduced dependence on specialized equipment set it apart from more invasive alternatives.

Moreover, chemical synovectomy can be administered by trained healthcare providers in the field.[110] By offering field-appropriate medical procedures, chemical synovectomy significantly enhances the overall quality of life for refugees with hemophilia, aligning seamlessly with humanitarian principles that champion equitable access to care and innovative healthcare solutions.

Furthermore, early detection of synovitis through these approaches translates into numerous clinical and economic benefits. It results in reduced consumption of treatment products for current and future treatments, as evidenced by a comparison of the total factor concentrate used by individuals annually before and after early intervention.[111] Moreover, it leads to earlier diagnoses of joint disease, resulting in fewer complications and less damage to the joints, translating into improved mobility, enhanced quality of life, and expanded patient education and employment opportunities.[112] Additionally, it minimizes hospitalizations and allows for outpatient treatments, effectively reducing the burden on hospital resources. These factors reduce the cost per patient, resulting in a positive economic outcome for individuals with bleeding disorders.[113]

6.2.    Humanitarian Perspectives

From a humanitarian perspective, addressing the healthcare needs of populations affected by conflict, displacement, or natural disasters in refugee settings is a complex and urgent endeavor. This perspective calls for a comprehensive approach that combines immediate medical care with long-term health planning, psychological support, and the reconstruction of healthcare infrastructure.[114] It encompasses various activities and collaborations, each crucial element in safeguarding the health and well-being of individuals and communities facing crisis.

One of the defining features of humanitarian health efforts is their dual focus on managing immediate health emergencies and laying the groundwork for sustained healthcare recovery and resilience.[115] This approach ensures the delivery of emergency medical treatment for injuries, infections, and chronic conditions while establishing healthcare services and systems capable of enduring long after the initial crisis has subsided.[116]

Effective humanitarian healthcare relies on collaboration among various stakeholders.[117] This collaborative effort includes healthcare providers such as doctors, nurses, specialists, humanitarian organizations, local and international non-governmental organizations (NGOs), government agencies, and community groups.[118] By leveraging these stakeholders’ unique expertise and resources, healthcare interventions become comprehensive, aligned, and responsive to the needs of affected populations.

Moreover, the humanitarian perspective emphasizes integrated health services that address a wide spectrum of health needs, recognizing that crises bring about diverse health challenges. These integrated services encompass primary healthcare, mental health support, nutritional assistance, and specialized care for conditions such as hemophilia. They are designed to be accessible, equitable, and sensitive to the trauma and disruptions that crisis-affected populations endure.[119]

Capacity building and community empowerment are essential components of the humanitarian approach. Efforts are made to equip local healthcare workers with the necessary skills, improve healthcare facilities, and empower communities to actively participate in their health.[120] This approach enhances immediate crisis response and strengthens healthcare systems’ long-term sustainability and resilience.

Advocacy is another vital aspect of humanitarian healthcare. Humanitarian organizations and healthcare providers often advocate to raise awareness about crisis-affected populations’ health challenges and influence policies and funding decisions.[121] This advocacy encompasses concerns about the accessibility of vital medications and healthcare services, safeguarding the well-being of healthcare personnel and facilities, and tackling broader factors influencing health, including water, sanitation, and housing conditions.

In the context of pharmaceutical company collaboration, specialized humanitarian NGOs play a pivotal role in ensuring the importation, distribution, and effective use of therapeutic products such as clotting factor concentrates (CFCs) for individuals with rare diseases like hemophilia in refugee settings[122] These collaborations are indispensable for several reasons:

• Product Donation: Pharmaceutical companies often donate essential medications like CFCs to these NGOs, ensuring a stable supply of lifesaving products.
• Expertise and Support: Pharmaceutical companies provide expertise in handling, storing, and transporting specialized medications, as well as navigating regulatory requirements.
• Cold Chain Management: They offer guidance on maintaining the cold chain required for certain medications, ensuring their efficacy.
• Regulatory Compliance: Pharmaceutical companies assist in securing permits and approvals for importation and distribution.
• Addressing Importation Challenges: NGOs work hand in hand with pharmaceutical companies and authorities to streamline the importation process, addressing regulatory hurdles, customs procedures, and logistical difficulties.
• Shipping and Transport: They coordinate the shipping and transportation of medications to refugee camps, selecting appropriate methods and ensuring secure packaging.
• Storage and Distribution: NGOs establish secure storage facilities and manage distribution to ensure patients receive medications on schedule.
• Training and Education: NGOs train patients and families on medication administration, empowering them to manage their conditions effectively, especially in the absence of sufficient medical staff.

The humanitarian perspective underscores the importance of collaboration with pharmaceutical companies and other stakeholders. Specialized humanitarian NGOs play a pivotal role in ensuring the importation, distribution, and effective use of therapeutic products like CFCs for individuals with rare diseases such as hemophilia in refugee settings.[123] Their expertise, coordination efforts, and dedication to addressing unique challenges contribute to improved healthcare access and outcomes for vulnerable populations, aligning with the principles of the humanitarian perspective.

7.     Theoretical Frameworks in Humanitarian Medicine

Theoretical frameworks are indispensable guiding tools, aiding practitioners in navigating the intricate landscape of healthcare delivery. These frameworks not only shed light on the underlying factors shaping health outcomes—factors such as socioeconomic disparities, cultural diversity, and political complexities—but also provide a structured foundation for effective problem-solving and decision-making. They serve as the compass by which strategies and interventions are developed, ensuring they are both evidence-based and contextually tailored to the unique challenges.

In the context of this paper, which centers on the critical challenge of delivering lifesaving treatments to Syrian refugees with hemophilia, certain theoretical frameworks emerge as particularly pertinent. Their analytical rigor and practical applicability extend beyond mere academic discourse; they are essential operational tools that inform and enhance humanitarian strategies. By leveraging these frameworks, we can better guarantee the effectiveness of interventions while remaining attuned to the distinct needs of populations affected by crises.

These frameworks include Resilience Theory, Systems Theory, Theory of Complex Adaptive Systems, and Crisis and Conflict Theory. Each theory provides a unique perspective on the challenges faced in delivering healthcare to refugees. Moreover, they enable the ability to develop strategies that address their immediate needs while contributing to sustainable recovery in crisis-affected communities. Together, these frameworks form the intellectual foundation to help dissect the multifaceted challenges of delivering healthcare to refugees, leading to strategies responsive to immediate needs and geared towards sustainable recovery and rebuilding affected communities.

7.1.      Systems Theory in Crisis Management

Drawing its origins from fields like biology and engineering, Systems Theory proposes that a healthcare system is not a mere collection of individual components but rather a complex network comprising stakeholders, processes, and interactions.[124] This holistic perspective becomes particularly critical when navigating the dynamic interplay of elements within healthcare systems operating in refugee camps.

Systems Theory could help examine the entire supply chain from procurement to distribution, recognizing the interconnectedness of factors such as procurement policies, logistics, and funding mechanisms.[125] By adopting this perspective, critical areas could be identified where targeted interventions can have the most significant impact, such as streamlining procurement procedures or establishing regional distribution hubs.

Likewise, in addressing the need to train local healthcare workers to provide specialized treatments, Systems Theory encourages considering the broader context.[126] It allows assessing factors like available resources, educational infrastructure, and community engagement. With this perspective, comprehensive solutions could be developed that include partnerships with local educational institutions, adapting training materials to local languages and customs, and fostering collaboration among healthcare organizations.

Effective coordination among humanitarian organizations is essential for optimal resource allocation.[127] Systems Theory helps understand organizations’ intricate interactions, including funding sources, reporting mechanisms, and communication protocols. By adopting a Systems Theory perspective, strategies can be designed to improve coordination, such as standardized reporting formats, shared databases, and regular cross-organizational meetings.

7.2.     Resilience Theory and its Application in Humanitarian Contexts

Resilience Theory, rooted in psychology and ecology, emerges as a cornerstone in comprehending the resilience of systems across diverse fields, including healthcare. At its core, this theory embodies the concept of resilience, signifying the ability of individuals, communities, or systems to withstand, rebound from, and evolve through adversities.[128] It transcends mere survival, emphasizing the transformative potential of challenges into avenues for development.

In humanitarian medicine, the principles of Resilience Theory help devise strategies that empower healthcare systems and providers to remain functional and innovative during crises.[129] In settings like refugee camps and conflict zones, where standard practices may be compromised, medical facilities and personnel must exhibit adaptability and continuously deliver care. For healthcare workers, resilience may manifest as adjusting treatment protocols to suit limited resources or reshaping services to meet the evolving needs of displaced populations.

Resilience Theory takes on profound relevance when contemplating the healthcare of Syrian refugees living with hemophilia. Given the chronic nature of this condition and the imperative of ongoing care, managing hemophilia within the unstable and resource-scarce milieu of refugee camps presents formidable challenges. In this context, resilience encompasses the pursuit of inventive approaches to managing the condition within environmental constraints. This may involve innovations in storing and administrating clotting factors or creating alternative methods for monitoring the course of the disease.

Moreover, this concept extends its embrace beyond the patients to encompass the communities and healthcare providers that support them. It entails their capacity to adapt to the constraints of the camp environment continually, ensuring the provision of essential healthcare services. Adaptation might manifest in various forms, such as training local healthcare workers in hemophilia care, establishing temporary clinics, or utilizing international aid networks to secure medical supplies.

An illustrative embodiment of resilience unfolds within the Lebanese refugee camp, where Khodar’s brother is a testament to unwavering determination. Despite the challenges of managing hemophilia in the camp’s resource-scarce environment, Khodar’s brother found resilience in learning to administer clotting factor infusions, ensuring his sibling received the crucial treatment. Beyond this, he became a force for positive change by engaging with the World Federation of Hemophilia, a medical charity committed to supporting hemophilia patients worldwide. Through this association, he raised awareness, secured essential medical supplies, and fostered a sense of community among those facing similar challenges.

Within humanitarian healthcare, Resilience Theory transcends mere endurance and triumph over adversities; it champions the spirit of innovation and collective endeavor crucial in confronting formidable challenges. The stories of Syrian refugees living with hemophilia and the dedicated healthcare professionals who support them are potent illustrations of human resilience and the ability not only to endure but also to persevere in the face of incredibly challenging circumstances.

7.3.     Theory of Complex Adaptive Systems

The Theory of Complex Adaptive Systems (CAS) unveils critical insights into the ever-changing healthcare landscape within refugee camps. Rooted in the study of natural systems, CAS highlights the remarkable capacity of systems to evolve, learn, and adapt when faced with environmental changes.[130] These systems exhibit feedback loops and emergent behaviors, where minor adjustments yield significant, often unforeseen, outcomes.[131]

The unpredictable and dynamic nature of humanitarian crises underscores the need for healthcare systems that embody the principles of CAS. Such environments demand healthcare frameworks that are resilient and agile enough to respond swiftly to rapid changes, such as fluctuations in patient populations or disruptions in supply chains. CAS theory illuminates how healthcare systems within these settings can evolve to ensure continuous and effective care.[132]

For refugees grappling with chronic conditions like hemophilia, the application of CAS principles translates into the development of healthcare services that are highly responsive and adaptable. This may involve the creation of decentralized healthcare models that facilitate rapid resource mobilization or the establishment of modular treatment facilities designed for easy adjustment according to changing demands.

Operational flexibility and innovation constitute core elements of CAS in refugee healthcare. This approach may entail implementing telehealth services to surmount physical barriers or establishing dynamic supply chain systems that can swiftly adjust to disruptions. Such innovations guarantee the availability of essential medications, like clotting factors, precisely when and where they are needed most.

A pivotal facet of CAS within healthcare is utilizing feedback to inform and refine practices. For instance, harnessing real-time data on treatment efficacy can lead to better adapting medical protocols to suit the unique conditions within the camps. Patient feedback can serve as a driving force behind the development of educational programs tailored precisely to address cultural or knowledge barriers about hemophilia treatment.

For example, a minor alteration in the distribution method of clotting factors, prompted by feedback from patients and healthcare workers, could significantly improve treatment access and adherence among hemophilia patients. This seemingly minor adjustment serves as a prime illustration of the adaptive nature of the healthcare system operating under CAS principles. In such systems, local interactions can catalyze broader systemic enhancements.

The Theory of Complex Adaptive Systems provides a strategic lens through which healthcare management within refugee camps can be comprehensively understood and improved. By promoting adaptable, resilient, and continuously evolving systems, CAS offers a comprehensive framework for navigating the intricate medical, logistical, social, and economic challenges inherent in crisis environments. Applying CAS principles to healthcare delivery for Syrian refugees with hemophilia ensures that systems are not only responsive to current needs but are also poised to meet future challenges with agility and foresight. The multidisciplinary perspectives within the humanitarian context converge harmoniously through CAS, forging a path toward innovative and effective healthcare solutions.

7.4.     Crisis and Conflict Theory

Crisis and Conflict Theory examines the profound effects of sociopolitical upheavals on societal structures, including healthcare systems, and is pivotal in understanding how conflicts can dramatically disrupt the status quo.[133] It highlights how such upheavals often hinder the delivery of essential services and lead to significant changes in institutional priorities and capacities.

Within the intense and complex environment of conflict, healthcare delivery confronts extraordinary challenges. Crisis and Conflict Theory sheds light on how these crises impact healthcare systems, encompassing the destruction of medical infrastructure, displacement of healthcare professionals, and disruption of vital supply chains.[134] Notably, the theory draws attention to the heightened vulnerability of populations in conflict zones, where the need for medical care increases dramatically even as access to such care diminishes.

The application of Crisis and Conflict Theory to the Syrian refugee crisis, particularly for those who have hemophilia, reveals its stark relevance. The ongoing conflict has led to extensive damage to healthcare facilities and the displacement of large populations, placing an immense burden on already strained healthcare systems. For refugees with hemophilia, this translates into irregular access to essential treatments, heightened risk of medical complications, and disrupted continuity of care, exacerbating an already challenging situation.

Furthermore, it underscores conflict’s broader, often deep-seated impacts on healthcare delivery. These impacts extend to supply chain disruptions, the availability of healthcare workers, and the shifting needs of a stressed and vulnerable population. It highlights the necessity of understanding that the challenges in healthcare delivery are intricately linked to the broader dynamics of the conflict, requiring solutions that are as multifaceted as the problems themselves.

In this context, integrating Crisis and Conflict Theory into the healthcare strategy calls for a comprehensive approach. The approach must address not only the immediate physical health needs but also the psychological and emotional well-being of the refugees, acknowledging the profound influence of trauma and stress on their overall health.

Crisis and Conflict Theory serves as a lens for examining the unique challenges and a guide for developing strategic responses in humanitarian healthcare. It advocates for healthcare solutions that are agile, nuanced, and capable of adapting to the rapidly changing landscape of crises. For Syrian refugees with hemophilia, this entails crafting healthcare strategies that respond effectively to immediate medical needs while remaining cognizant of and responsive to the larger, ongoing impacts of the conflict. The implementation of this theory in the field necessitates a commitment to building healthcare systems that are resilient, adaptable, and deeply informed by an understanding of the complex interplay of factors in crisis environments.

8.     Multidisciplinary Problem-Solving: Synthesizing Theoretical Frameworks in Humanitarian Healthcare

Within the dynamic realm of humanitarian medicine, synthesizing these theoretical frameworks becomes the linchpin of innovative problem-solving. Collectively, these frameworks provide a multifaceted perspective that empowers us to address the multifarious challenges of healthcare delivery in crisis environments. Rather than remaining siloed in theoretical domains, they converge into a multidisciplinary approach that becomes instrumental in crafting solutions.

This interdisciplinary lens serves as a strategic compass, directing us toward effective problem-solving strategies that are attuned to the complexities of humanitarian crises. It fosters a collaborative environment where healthcare practitioners, policymakers, researchers, and humanitarian workers come together, pooling their diverse expertise and insights. This collective effort is an intellectual exercise and a practical and ethical imperative for addressing the intricate health challenges crisis-affected populations face.

By integrating these theoretical perspectives, we comprehensively understand the multifaceted issues. We recognize that healthcare delivery in crisis settings is not a one-dimensional challenge but a complex interplay of factors that require nuanced solutions. This comprehensive understanding serves as the foundation upon which innovative problem-solving is built.

Precision and impact are vital benefits of this multidisciplinary approach. Each theoretical framework contributes a unique viewpoint, enriching our problem-solving toolkit. We can design interventions that are finely tuned to the specific context of a crisis, addressing the immediate symptoms and the underlying causes. This precision ensures that our efforts have a more profound impact on the ground.

Perhaps one of the most critical advantages is this approach’s agility and adaptability to problem-solving. Humanitarian crises are fluid and ever-changing, demanding healthcare systems that can pivot rapidly. The multidisciplinary lens allows us to simultaneously consider medical, logistical, social, and psychological factors. This flexibility ensures solutions remain relevant and effective in dynamic crisis environments.

Sustainability is another hallmark of this approach. These solutions are not quick fixes; they are designed with a long-term perspective. By incorporating insights from various disciplines, we ensure that healthcare systems address immediate needs and contribute to the resilience and sustainability of healthcare delivery in the face of future challenges.

Patient-centered care is a central focus of this multidisciplinary approach. It acknowledges that healthcare outcomes are influenced by many factors beyond just medical treatment. By considering care’s social, psychological, and cultural aspects, we craft strategies that holistically address the well-being of crisis-affected populations. This approach recognizes that individuals are not isolated patients but members of communities with complex needs and aspirations.

Synthesizing theoretical frameworks into multidisciplinary problem-solving is the hallmark of effective humanitarian healthcare. It bridges the gap between theory and practice, offering practical and contextually relevant solutions to the multifaceted challenges of crisis environments.

9.     Conclusion

The exploration of healthcare challenges and strategies for Syrian refugees with hemophilia in Lebanese camps underscores the profound significance of interdisciplinary perspectives and interventions grounded in theoretical frameworks in humanitarian medicine. This complex scenario, characterized by medical, psychological, socioeconomic, and logistical challenges, demands a response that transcends traditional healthcare approaches. The interdisciplinary perspective is not merely an enhancement but a necessity, ensuring that care delivery is comprehensive, adaptable, and responsive to the multifaceted nature of humanitarian crises.

Integrating medical expertise with psychological, socioeconomic, and logistical insights reflects a deep understanding of the complexities of providing care in crisis settings. Medical interventions, while crucial, are insufficient in isolation. The psychological support acknowledges the trauma and mental stress of displacement and chronic illness. Socioeconomic strategies address the broader determinants of health, including access to necessities and the financial burden of chronic disease management. Logistical considerations ensure the continuous and efficient delivery of essential medical supplies, a critical factor in the effective management of hemophilia.

The theoretical frameworks of Systems Theory, Resilience Theory, Complex Adaptive Systems, and Crisis and Conflict Theory provide a structured lens through which the challenges and responses can be analyzed and understood. These frameworks offer valuable insights into the dynamics of healthcare systems in crisis, the importance of resilience in individuals and systems, and the need for flexible healthcare delivery models that adapt to rapidly changing circumstances. They guide the development of strategies that are not only practical but also ethically sound and sensitive to the cultural and social contexts of refugee populations.

This interdisciplinary, theory-based approach yields several key outcomes. It enhances the efficacy of healthcare delivery, ensuring that interventions are tailored to the specific needs of the refugee population. It promotes sustainability, building healthcare systems that are resilient and capable of adapting to future challenges. It also ensures that care is patient-centered, addressing not just the immediate health needs but the overall well-being of individuals.

The case study of Syrian refugees with hemophilia in Lebanese camps exemplifies the critical importance of an interdisciplinary approach to humanitarian healthcare. This approach, grounded in robust theoretical frameworks, is essential for addressing the complex health needs of refugees and migrants in resource-scarce environments. It exemplifies the essence of humanitarian medicine – a discipline committed to improving the health and well-being of some of the most vulnerable populations in the world. The lessons learned from this case study have broader implications, highlighting the need for healthcare systems worldwide to adopt similar interdisciplinary and theory-based approaches to tackle the diverse and complex challenges in global health effectively.

 

Conflict of Interest

The authors declare no conflict of interest.

Acknowledgment

I acknowledge all the support from my supervising professor, Prof. Laurent CLEENEWERCK

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[1] Craig Calhoun, “The Idea of Emergency: Humanitarian Action and Global (Dis)Order,” n.d.

[2] Samantha L Thomas and Stuart DM Thomas, “Displacement and Health,” British Medical Bulletin 69, no. 1 (June 1, 2004): 115–27, https://doi.org/10.1093/bmb/ldh009.

[3] Thomas and Thomas.

[4] Thomas and Thomas.

[5] Ahmed Hassan Amara and Syed Mohamed Aljunid, “Noncommunicable Diseases among Urban Refugees and Asylum-Seekers in Developing Countries: A Neglected Health Care Need,” Globalization and Health 10 (2014): 24, https://doi.org/10.1186/1744-8603-10-24.

[6] Amara and Aljunid.

[7] Brian O’Mahony and Claudia Black, “Expanding Hemophilia Care in Developing Countries,” Seminars in Thrombosis and Hemostasis 31, no. 5 (December 2005): 561–68, https://doi.org/10.1055/s-2005-922228.

[8] A Srivastava, E Santagostino, and A Dougall, “WFH Guidelines for the Management of Hemophilia,” Haemophilia 2020, no. 26 (2020): 1–158, https://doi.org/10.1111/hae.14046.

[9] Lina Hamad et al., “Mapping the Diverse Genetic Disorders and Rare Diseases Among the Syrian Population: Implications on Refugee Health and Health Services in Host Countries,” Journal of Immigrant and Minority Health 22, no. 6 (December 1, 2020): 1347–67, https://doi.org/10.1007/s10903-020-00987-7.

[10] Genji Terasaki, Nicole Chow Ahrenholz, and Mahri Z. Haider, “Care of Adult Refugees with Chronic Conditions,” The Medical Clinics of North America 99, no. 5 (September 2015): 1039–58, https://doi.org/10.1016/j.mcna.2015.05.006.

[11] Terasaki, Ahrenholz, and Haider.

[12] Jeremy C. Kane et al., “A Scoping Review of Health-Related Stigma Outcomes for High-Burden Diseases in Low- and Middle-Income Countries,” BMC Medicine 17, no. 1 (February 15, 2019): 17, https://doi.org/10.1186/s12916-019-1250-8.

[13] Lana Ruvolo Grasser, “Addressing Mental Health Concerns in Refugees and Displaced Populations: Is Enough Being Done?,” Risk Management and Healthcare Policy 15 (May 6, 2022): 909–22, https://doi.org/10.2147/RMHP.S270233.

[14] Mohamed Abbas et al., “Migrant and Refugee Populations: A Public Health and Policy Perspective on a Continuing Global Crisis,” Antimicrobial Resistance and Infection Control 7 (September 20, 2018): 113, https://doi.org/10.1186/s13756-018-0403-4.

[15] Faten Kikano, Gabriel Fauveaud, and Gonzalo Lizarralde, “Policies of Exclusion: The Case of Syrian Refugees in Lebanon,” Journal of Refugee Studies 34, no. 1 (March 1, 2021): 422–52, https://doi.org/10.1093/jrs/feaa058.

[16] Shannon Doocy et al., “Prevalence and Care-Seeking for Chronic Diseases among Syrian Refugees in Jordan,” BMC Public Health 15 (October 31, 2015): 1097, https://doi.org/10.1186/s12889-015-2429-3.

[17] Karl Blanchet, Fouad M. Fouad, and Tejendra Pherali, “Syrian Refugees in Lebanon: The Search for Universal Health Coverage,” Conflict and Health 10 (June 1, 2016): 12, https://doi.org/10.1186/s13031-016-0079-4.

[18] Terasaki, Ahrenholz, and Haider, “Care of Adult Refugees with Chronic Conditions.”

[19] Terasaki, Ahrenholz, and Haider.

[20] IRC Lebanon and NRC Lebanon, “Legal Status Of Refugees From Syria: Challenges and Consequences of Maintaining Legal Stay in Beirut and Mount Lebanon,” Reports , Reports and Assessments, accessed December 21, 2023, https://data2.unhcr.org/en/documents/details/44738.

[21] Parth Mehta and Anil Kumar Reddy Reddivari, “Hemophilia,” in StatPearls (Treasure Island (FL): StatPearls Publishing, 2023), http://www.ncbi.nlm.nih.gov/books/NBK551607/.

[22] Mehta and Reddivari.

[23] Mehta and Reddivari.

[24] Karin Knobe and Erik Berntorp, “Haemophilia and Joint Disease: Pathophysiology, Evaluation, and Management,” Journal of Comorbidity 1 (December 27, 2011): 51–59, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5556421/.

[25] Ibid.

[26] Ibid.

[27] Ibid.

[28] Ibid.

[29] Srivastava, Santagostino, and Dougall, “WFH Guidelines for the Management of Hemophilia.”

[30] Ibid.

[31] Ibid, 22.

[32] Glenn F. Pierce et al., “Achieving Access to Haemophilia Care in Low-Income and Lower-Middle-Income Countries: Expanded Humanitarian Aid Program of the World Federation of Hemophilia after 5 Years,” The Lancet Haematology 9, no. 9 (September 1, 2022): e689–97, https://doi.org/10.1016/S2352-3026(22)00209-5.

[33] Pierce et al.

[34] Annick Ndoumba-Mintya et al., “Optimizing Haemophilia Care in Resource-Limited Countries: Current Challenges and Future Prospects,” Journal of Blood Medicine 14 (February 20, 2023): 141–46, https://doi.org/10.2147/JBM.S291536.

[35] M. D. Kenneth A. Bauer, “Current Challenges in the Management of Hemophilia,” Hemophilia: Managing the Cost of Care With a Focus on Patient Outcomes [CME/CPE], 21 (March 30, 2015), https://www.ajmc.com/view/ace0024_mar15_hemophilia_bauer.

[36] Ndoumba-Mintya et al., “Optimizing Haemophilia Care in Resource-Limited Countries.”

[37] O’Mahony and Black, “Expanding Hemophilia Care in Developing Countries.”

[38] Abdulaziz Omar, “Understanding and Preventing Attacks on Health Facilities During Armed Conflict in Syria,” Risk Management and Healthcare Policy 13 (March 18, 2020): 191–203, https://doi.org/10.2147/RMHP.S237256.

[39] Zoe Magee, “War-Ravaged Syria Faces ‘dire’ Humanitarian Crisis after Deadly Quake,” ABC News, February 7, 2023, https://abcnews.go.com/International/war-ravaged-syria-faces-dire-humanitarian-crisis-after/story?id=96955367.

[40] Philip Hunter, “The Refugee Crisis Challenges National Health Care Systems,” EMBO Reports 17, no. 4 (April 2016): 492–95, https://doi.org/10.15252/embr.201642171.

[41] Ghazi O Tadmouri et al., “Consanguinity and Reproductive Health among Arabs,” Reproductive Health 6 (October 8, 2009): 17, https://doi.org/10.1186/1742-4755-6-17.

[42] Tadmouri et al.

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[44] Srivastava, Santagostino, and Dougall, “WFH Guidelines for the Management of Hemophilia,” 23.

[45] Ibid., 21.

[46] Kelso Cratsley, Mohamad Adam Brooks, and Tim K. Mackey, “Refugee Mental Health, Global Health Policy, and the Syrian Crisis,” Frontiers in Public Health 9 (2021), https://www.frontiersin.org/articles/10.3389/fpubh.2021.676000.

[47] Srivastava, Santagostino, and Dougall, “WFH Guidelines for the Management of Hemophilia”, 97.

[48] Ibid., 24.

[49] World Federation of Hemophilia, “Report on the Annual Global Survey 2022,” Annual (Montréal, Québec: World Federation of Hemophilia), accessed December 8, 2023, https://elearning.wfh.org/resource/report-on-the-annual-global-survey-2022/.

[50] Pierce et al., “Achieving Access to Haemophilia Care in Low-Income and Lower-Middle-Income Countries.”

[51] Leigh Daynes, “The Health Impacts of the Refugee Crisis: A Medical Charity Perspective,” Clinical Medicine 16, no. 5 (October 2016): 437–40, https://doi.org/10.7861/clinmedicine.16-5-437.

[52] Srivastava, Santagostino, and Dougall, “WFH Guidelines for the Management of Hemophilia,” 24.

[53] Knobe and Berntorp, “Haemophilia and Joint Disease.”

[54] Ibid.

[55] Abbas et al., “Migrant and Refugee Populations.”

[56] O’Mahony and Black, “Expanding Hemophilia Care in Developing Countries.”

[57] Srivastava, Santagostino, and Dougall, “WFH Guidelines for the Management of Hemophilia.”

[58] Knobe and Berntorp, “Haemophilia and Joint Disease.”

[59] Knobe and Berntorp.

[60] Srivastava, Santagostino, and Dougall, “WFH Guidelines for the Management of Hemophilia,” 143.

[61] Rubén Cuesta-Barriuso et al., “Hemophilic Arthropathy: Barriers to Early Diagnosis and Management,” Journal of Blood Medicine 13 (October 17, 2022): 589–601, https://doi.org/10.2147/JBM.S343924.

[62] Ahmad Al-Huniti et al., “Mental Health Disorders in Haemophilia: Systematic Literature Review and Meta-Analysis,” Haemophilia : The Official Journal of the World Federation of Hemophilia 26, no. 3 (May 2020): 431–42, https://doi.org/10.1111/hae.13960.

[63] Cratsley, Brooks, and Mackey, “Refugee Mental Health, Global Health Policy, and the Syrian Crisis.”

[64] Al-Huniti et al., “Mental Health Disorders in Haemophilia.”

[65] Ameer Kakaje et al., “Mental Disorder and PTSD in Syria during Wartime: A Nationwide Crisis,” BMC Psychiatry 21, no. 1 (January 2, 2021): 2, https://doi.org/10.1186/s12888-020-03002-3.

[66] Kakaje et al.

[67] Aubrey S. Chiu et al., “Social Participation and Hemophilia: Self‐perception, Social Support, and Their Influence on Boys in Canada,” Research and Practice in Thrombosis and Haemostasis 5, no. 8 (December 1, 2021), https://doi.org/10.1002/rth2.12627.

[68] Cratsley, Brooks, and Mackey, “Refugee Mental Health, Global Health Policy, and the Syrian Crisis.”

[69] Charity Okide et al., “Challenges Facing Community-Dwelling Adults with Hemophilia: Implications for Community-Based Adult Education and Nursing,” Journal of International Medical Research 48 (July 16, 2019): 030006051986210, https://doi.org/10.1177/0300060519862101.

[70] Okide et al.

[71] Terasaki, Ahrenholz, and Haider, “Care of Adult Refugees with Chronic Conditions.”

[72] Kateřina Ratajová et al., “Social Support and Resilience in Persons with Severe Haemophilia: An Interpretative Phenomenological Analysis,” Haemophilia: The Official Journal of the World Federation of Hemophilia 26, no. 3 (May 2020): e74–80, https://doi.org/10.1111/hae.13999.

[73] Ratajová et al.

[74] Doocy et al., “Prevalence and Care-Seeking for Chronic Diseases among Syrian Refugees in Jordan.”

[75] Kikano, Fauveaud, and Lizarralde, “Policies of Exclusion.”

[76] Adam Coutts, Fouad M Fouad, and Rajaie Batniji, “Assessing the Syrian Health Crisis: The Case of Lebanon,” The Lancet 381, no. 9875 (April 20, 2013): e9, https://doi.org/10.1016/S0140-6736(13)60863-6.

[77] Sarah E. Parkinson and Orkideh Behrouzan, “Negotiating Health and Life: Syrian Refugees and the Politics of Access in Lebanon,” Social Science & Medicine 146 (December 1, 2015): 324–31, https://doi.org/10.1016/j.socscimed.2015.10.008.

[78] Sahar Atrache, “Lebanon’s Deepening Crisis: The Case for a Sustainable Aid Response,” Refugees International, December 2, 2021, https://www.refugeesinternational.org/reports-briefs/lebanons-deepening-crisis-the-case-for-a-sustainable-aid-response/.

[79] Jennifer Dathan, “Syrian Refugee Access to Healthcare in Lebanon,” AOAV (blog), March 12, 2020, https://aoav.org.uk/2020/syrian-refugee-access-to-healthcare-in-lebanon/.

[80] Parkinson and Behrouzan, “Negotiating Health and Life.”

[81] UNHCR, “Lebanon-UNHCR- 2020 UNHCR Referral Health Care Annual Report,” April 26, 2021, https://data2.unhcr.org/en/documents/details/86340.

[82] Blanchet, Fouad, and Pherali, “Syrian Refugees in Lebanon.”

[83] Doocy et al., “Prevalence and Care-Seeking for Chronic Diseases among Syrian Refugees in Jordan.”

[84] Atrache, “Lebanon’s Deepening Crisis.”

[85] Blanchet, Fouad, and Pherali, “Syrian Refugees in Lebanon.”

[86] Amara and Aljunid, “Noncommunicable Diseases among Urban Refugees and Asylum-Seekers in Developing Countries.”

[87] Saleyha Ahsan, “Lebanese Health Care Racked by Medicine Shortages,” The Lancet 398, no. 10300 (August 14, 2021): 568, https://doi.org/10.1016/S0140-6736(21)01852-3.

[88] Maja Janmyr, “Precarity in Exile: The Legal Status of Syrian Refugees in Lebanon,” Refugee Survey Quarterly 35, no. 4 (December 1, 2016): 58–78, https://doi.org/10.1093/rsq/hdw016.

[89] Ibid.

[90] Ibid.

[91] Ibid.

[92] Ibid.

[93] Ibid.

[94] IRC Lebanon and NRC Lebanon, “LEGAL STATUS OF REFUGEES FROM SYRIA.”

[95] Nizar Saghieh, “Manufacturing Vulnerability in Lebanon: Legal Policies as Efficient Tools of Discrimination,” Legal Agenda (blog), March 18, 2015, https://english.legal-agenda.com/manufacturing-vulnerability-in-lebanon-legal-policies-as-efficient-tools-of-discrimination/.

[96] “UN: Syrian Refugees in Lebanon Struggle to Survive Amid Worst Socio-Economic Crisis in Decades | United Nations in Lebanon,” accessed December 21, 2023, https://lebanon.un.org/en/146440-un-syrian-refugees-lebanon-struggle-survive-amid-worst-socio-economic-crisis-decades, https://lebanon.un.org/en/146440-un-syrian-refugees-lebanon-struggle-survive-amid-worst-socio-economic-crisis-decades.

[97] Kikano, Fauveaud, and Lizarralde, “Policies of Exclusion.”

[98] Kikano, Fauveaud, and Lizarralde.

[99] Staff, “Syrian Refugees: A Primer on International Legal Obligations,” Freedom House, November 24, 2015, https://freedomhouse.org/article/syrian-refugees-primer-international-legal-obligations.

[100] Ibid.

[101] Ziba Vaghri, Zoë Tessier, and Christian Whalen, “Refugee and Asylum-Seeking Children: Interrupted Child Development and Unfulfilled Child Rights,” Children 6, no. 11 (October 30, 2019): 120, https://doi.org/10.3390/children6110120.

[102] Elie Bou Sanayeh and Carolla El Chamieh, “The Fragile Healthcare System in Lebanon: Sounding the Alarm about Its Possible Collapse,” Health Economics Review 13, no. 1 (April 4, 2023): 21, https://doi.org/10.1186/s13561-023-00435-w.

[103] UNHCR, “Connecting Refugees: How Internet and Mobile Connectivity Can Improve Refugee Well-Being and Transform Humanitarian Action – World | ReliefWeb,” reliefweb, September 14, 2016, https://reliefweb.int/report/world/connecting-refugees-how-internet-and-mobile-connectivity-can-improve-refugee-well-being.

[104] Aaaron Martin, “Connecting With Confidence: Managing Digital Risks to Refugee Connectivity” (Genève: UNHCR Innovation Service, June 2020), https://www.unhcr.org/innovation/wp-content/uploads/2021/03/CWC-Managing-Digital-Risks-To-Refugee-Connectivity-Report.pdf.

[105] Marwan M Refaat and Kamel Mohanna, “Syrian Refugees in Lebanon: Facts and Solutions,” The Lancet 382, no. 9894 (August 31, 2013): 763–64, https://doi.org/10.1016/S0140-6736(13)61461-0.

[106] Nihal Bakeer et al., “Musculoskeletal Ultrasound in Hemophilia: Results and Recommendations from a Global Survey and Consensus Meeting,” Research and Practice in Thrombosis and Haemostasis 5, no. 5 (July 10, 2021): e12531, https://doi.org/10.1002/rth2.12531.

[107] Bakeer et al.

[108] N. Gallastegui et al., “The Role of Point-of-Care Musculoskeletal Ultrasound for Routine Joint Evaluation and Management in the Hemophilia Clinic – A Real World Experience,” BMC Musculoskeletal Disorders 23, no. 1 (December 21, 2022): 1111, https://doi.org/10.1186/s12891-022-06042-w.

[109] Lize F. D. van Vulpen et al., “Synovitis and Synovectomy in Haemophilia,” Haemophilia 27, no. Suppl 3 (February 2021): 96–102, https://doi.org/10.1111/hae.14025.

[110] van Vulpen et al.

[111] Emerito Carlos Rodriguez-Merchan et al., “Radiosynovectomy for the Treatment of Chronic Hemophilic Synovitis: An Old Technique, but Still Very Effective,” Journal of Clinical Medicine 11, no. 24 (December 16, 2022): 7475, https://doi.org/10.3390/jcm11247475.

[112] Rodriguez-Merchan et al.

[113] Rodriguez-Merchan et al.

[114] Calhoun, “The Idea of Emergency: Humanitarian Action and Global (Dis)Order.”

[115] Byron J. Good et al., “Medical Humanitarianism: Research Insights in a Changing Field of Practice,” Social Science & Medicine 120 (November 1, 2014): 311–16, https://doi.org/10.1016/j.socscimed.2014.09.027.

[116] Daynes, “The Health Impacts of the Refugee Crisis.”

[117] Grant Broussard et al., “Challenges to Ethical Obligations and Humanitarian Principles in Conflict Settings: A Systematic Review,” Journal of International Humanitarian Action 4, no. 1 (September 5, 2019): 15, https://doi.org/10.1186/s41018-019-0063-x.

[118] Asad L Asad, “Theorizing the Relationship between NGOs and the State in Medical Humanitarian Development Projects,” Social Science, 2014.

[119] Taylor B. Seybolt, “Harmonizing the Humanitarian Aid Network: Adaptive Change in a Complex System,” International Studies Quarterly 53, no. 4 (December 1, 2009): 1027–50, https://doi.org/10.1111/j.1468-2478.2009.00567.x.

[120] Asad, “Theorizing the Relationship between NGOs and the State in Medical Humanitarian Development Projects.”

[121] Asad.

[122] Elizabeth Sukkar, “Supplying Medicines to Refugees: A Logistical Nightmare,” The Pharmaceutical Journal, February 26, 2015, https://pharmaceutical-journal.com/article/feature/supplying-medicines-to-refugees-a-logistical-nightmare.

[123] I. C. Verma et al., “Transformative Effect of a Humanitarian Program for Individuals Affected by Rare Diseases: Building Support Systems and Creating Local Expertise,” Orphanet Journal of Rare Diseases 17, no. 1 (April 4, 2022): 87, https://doi.org/10.1186/s13023-022-02192-1.

[124] John Clarkson et al., “A Systems Approach to Healthcare: From Thinking to ­practice,” Future Healthcare Journal 5, no. 3 (October 2018): 151–55, https://doi.org/10.7861/futurehosp.5-3-151.

[125] Clarkson et al.

[126] Sobia Khan et al., “Embracing Uncertainty, Managing Complexity: Applying Complexity Thinking Principles to Transformation Efforts in Healthcare Systems,” BMC Health Services Research 18, no. 1 (March 21, 2018): 192, https://doi.org/10.1186/s12913-018-2994-0.

[127] Seybolt, “Harmonizing the Humanitarian Aid Network.”

[128] Dorothea Hilhorst, “Classical Humanitarianism and Resilience Humanitarianism: Making Sense of Two Brands of Humanitarian Action,” Journal of International Humanitarian Action 3, no. 1 (September 10, 2018): 15, https://doi.org/10.1186/s41018-018-0043-6.

[129] Hilhorst.

[130] Khan et al., “Embracing Uncertainty, Managing Complexity.”

[131] Ibid.

[132] Ibid.

[133] Okechukwu Ndeche and Samuel Iroye, “Key Theories In Peace And Conflict Studies And Their Impact On The Study And Practice” 2 (August 1, 2022): 20–34.

[134] M. H. D. Bahaa Aldin Alhaffar and Sandor Janos, “Public Health Consequences after Ten Years of the Syrian Crisis: A Literature Review,” Globalization and Health 17 (September 19, 2021): 111, https://doi.org/10.1186/s12992-021-00762-9.